Hi everyone , hope your as well as can be , I’m currently shielding again at the advice of the government.
I have been on steroids continuously for nearly 5 years at the most part 20/30mg daily .. i did a failed attempt at both xolair and mepolizumab and wasted a good 2 years.. I’m now on benralizumab and have been able to wean down to an amazing 3mg of pred but now my adrenals are shot , I’ve had a short synacthen test with a low response ..
I’m now being referred onto a endocrinologist .. I’m wondering if anyone has had adrenal issues and what to expect from this new specialist
Thanks in advance
Mark
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Sorry to hear this. As far as I’m aware I don’t have AI (not managed to wean low enough yet and now on kenalog 😅🤞🏻🤞🏻😬) and I know others on here will be able to help you more with their own experiences of AI but you may find this helps healthunlocked.com/asthmauk...
It’s about adrenal insufficiency written by someone who has it. 😉
Hi, I had adrenal issues when coming off prednisolone a few years ago. I had to go back on the prednisolone and wean off extremely slowly literally gram by gram.
I first noticed my adrenal issues with onset sudden panic attacks.
Hi Mark. After long term steroid use, mine are shot too. They’ll probably either tell you to increase your pred to 5mg (which is approximately equivalent to how much cortisol your adrenals naturally produce, but you might need more) or put you on steroid replacement therapy ie hydrocortisone. They seem to start people at 20mg daily (15mg on waking, 5mg mid pm) & tweak it as required. I’m actually on 30mg cos my health is generally poor, plus I have a permanent pseudomonas infection. But hydrocortisone is a more natural steroid so you don’t get the side effects of pred. They’ll likely see you every couple of months to start with & there’ll be an Endocrine Specialist Nurse you can contact.
Steroid replacement therapy works well but it’s important to double your dose if eg you’re ill or having surgery. This mimics what your body would do. Also, you mustn’t forget to take the hydrocortisone, ever. It’s essential to life & a few days with none can have serious impact. For this reason they’ll recommend you wear a Medicare bracelet and possibly keep an emergency h/c injection at home in case you ever need it.
The Pituitary Foundation is a good source of information & they have a very helpful Specialist Nurse who runs a helpline.
I wrote the post Emma linked to which I think covers most things. I've never seen a consultant for this but see a really good specialist nurse every few months, who I would like to clone to be an asthma nurse lol.
I didn't mention the injection though in that post - definitely ask to have one (or more) at home and for them to show you how to inject yourself. I got a long session with the specialist nurse where they showed me how to prepare and inject. I was convinced I wouldn't be able to do it but I managed it when I had a crisis and was quite pleased with myself! (It did take me ages to work out I needed to though; crisis really makes your brain stupid I found and I had already thrown up twice and then decided I had either norovirus, sepsis, or hypothermia as I was shivering. Idiot crisis brain likes to think it's House MD.).
You'll probably still need to be seen but it really helps to be able to give yourself that injection. In my case it was the middle of the night on Xmas Eve, I was staying with friends and I was some way from a hospital. I was VERY glad I had not forgotten to pack my injection, but did make sure the instructions were easier to find in future. I have 2 kits and I keep them in sunglasses cases with instructions. Mine are the kind you have to mix with saline but I think the pre-mixed ones may be back in stock now - you can ask them about this.If you go on a plane (oh I wish lol, seems like a distant memory) the hospital can give you a letter saying you have AI and need to have the kit with needles in your hand luggage. No one has ever asked but I always take it - ask them when you get your kit. I just tell them it's there when I go through security.
Other small points I don't think I covered but apologies if I'm repeating myself:
- Just to respond to what Hanne said, I and others find it better to take hydrocortisone 3x a day (so for 20 mg it's 10mg early (6.30am for me), 5mg mid morning (11.30am with amino tablets), 5mg late afternoon (4pm)), but they'll often just start off with 2 doses because they think it's easier. Timing is really important I've found - you need the most in the morning because that's when you naturally would have a cortisol surge, and if I don't get it by a certain time I will really notice. if I feel weird and tired and slow I check if I have missed a dose.
-I found 5mg pred in the am, which I took while I was waiting for tests, did not last - they said it was longer-acting than the hydro but I felt absolutely dead by evening. 3 doses of hydro worked much better.
-Be aware that you need to know your stuff if you go into hospital with asthma (or anything else). I second what Hanne says about the bracelet but even if you are conscious, many drs seem to absolutely lose the plot when it comes to endocrinology for some reason and do all sorts of weird things like get the dose wrong or leave you waiting for 5 hours. Always have a reserve stash of steroids hidden, know what you should be on, and query things if they sound odd.
They seem to have a particular problem getting their heads round me not taking steroids for asthma (I don't respond) and it confuses them when you take steroids but it isn't for asthma. So far they have tried practically every stupid thing you can think of, and some you can't, with hydro doses. I think the low point was when they tried to put me on a dose of 10mg total in a day, 2 days after an adrenal crisis caused by a virus plus asthma that happened when I was already increased to 30mg in a day. The admission was for the asthma set off by the virus and they thought it was a great idea to drop to my baseline dose (It was 10mg then, have gone back up to 20mg for now but would still be on 40mg for that instance). They seem to have real trouble with the concept of sick day dosing for some reason!!
If you have surgery or major dental work, or an endoscopy/colonoscopy, check they know what to give you as it will likely need extra steroids. (I have had none of those but know they require a top up). I will say my dentist seems very clued up; when I had my first routine appointment with him he saw AI on the form and asked me a lot of questions about my meds for it etc. He seemed to know way more than most doctors about AI!
Hope this helps, feel free to ask any questions and I'll try to answer if I can.
Thanks for the reply ... I’ve a feeling 3mg is too low because I’ve felt lousy for weeks , low mood , anxiety headaches and generally feeling unwell ... my GP is next to useless and seems to dismiss my adrenals every time I mention ?
3mg pred? Yeah that may be a bit low especially as you might be having symptoms from it. My asthma cons told me to stay on 5mg pred until I was seen by endo. Roughly speaking the hydro dose equivalent of pred is about 4x the pred dose - so 5mg pred = 20mg hydro; 3mg pred = 12mg hydro. That might be a bit low for you given the usual dose is 20mg hydro (but not an expert!)
While you wait for your appt with endo, you may find the Pituitary Foundation helpline useful: pituitary.org.uk/support-fo...
They have a specialist nurse who should be able to chat things through with you.
Ah, I didn’t notice the link in Emma’s post & had forgotten your excellent summary of AI.
I’ve tried taking h/c 3 x daily before at 20+5+5 but I’m on so many blasted drugs I forget. Even if I set a phone reminder, I’ll be nebbing or something when it pops up. But maybe I’ll have another go as it does make sense.
I so agree about the ignorance of medics. It seems endocrinology is just too hard for them! The best of them in hospital leave it to me to know what I’m doing, but I’ve even been told having surgery isn’t “serious” enough to warrant extra h/c & I only need it if I’m eg “seriously injured in a road accident.” Wtf?? This is dangerous but they’re completely unapologetic when I point it out & they look it up & realise they’re wrong. Because it’s not actually Addison’s, they seem to think we AI pts can survive without cortisol! My adrenals produce 2-5% so without h/c I’m not going to last long. Also, on two occasions paramedics AND A&E staff failed to notice my Medicalert even when I passed out, & I didn’t get an h/c injection until a relative arrived & told them what to do!
But I’d just like to reassure Mark: once you get settled on a regime, AI can be very well managed. I was fine for years til my health became so unstable. This is when AI gets tricky because it’s so difficult to replicate what your adrenals should be doing, and a “crisis” is a misnomer really cos it can creep up on you very slowly. Any problems, phone your specialist nurse or the PF helpline, or ask Lysistrata 😊
Oh, low cortisol definitely affects your mental state. I felt terrible. Low mood, as you say, depression, but also not being able to think straight, & being mentally less sharp. The fatigue is in a class of its own, beyond just “tired”. But replacement therapy works quickly so hopefully you’ll be back to your “normal” soon.
LysistrataAdministratorCommunity Ambassador in reply to
Yes I felt the same and still do if it's low - especially the brain fog. But as you say replacement therapy really does make a difference and I am fine day to day on the right dose.
LysistrataAdministratorCommunity Ambassador in reply to
Yes it is hard to remember - I always said I didn't want to take meds more than twice a day and I've ended up on 4x a day! Sometimes I do forget but overall find the split dosing worth it; hope you can find it helps you too.
I agree that it is completely possible to manage AI; my main complicating factor is the asthma and the management of that (including the unfortunate attitude to it - you'd think they could just look it up for surgery which is fairly basic! My endo nurse does say secondary AI is harder as there isn't specific guidance, but the main guidance does say it applies regardless of whether it's primary or secondary so they should be following that).
Hey there! Sorry to hear you've had such a rough time. Just an FYI, there are a lot of good posts on this in the archives if you search "adrenal insufficiency".
I developed secondary adrenal insufficiency (SAI) after years of steroid inhalers and frequent prednisone courses for my asthma. I was diagnosed with SAI after having an adrenal crisis last May and since then I've had to take 20 mg of hydrocortisone daily.
It hasn't been a fun journey but I'm doing my best. A lot of doctors have very little firsthand experience with AI patients because it is a pretty rare condition. Most of what I've learned has been from a support group and reading scientific papers online.
The key things to know:
-Hydrocortisone wears off after about 4 hours (more or less depending on the person) so it's best to divide your dose throughout the day to mimic your circadian rhythm of cortisol production. Your cortisol is highest in the morning so you want to be sure you have plenty of HC then. I take 10 mg at 830 am, 5 mg at 1230 pm, and 5 mg at 1530 pm. This is a terrific guide to circadian dosing:
-When you see your endocrinologist be sure to get:
* a prescription for 100 mg of HC in a vial; you will need to inject yourself if you start to have an adrenal crisis and then you'll have to get to A&E asap
* instructions for doctors on what to do if you are having an adrenal crisis; keep these in your wallet and on you at all times (adrenal crises can be deadly and sometimes hospital staff don't treat them properly--the instructions should say to see you immediately and get you on a drip of HC and saline asap)
-It's good to wear a medical ID bracelet saying you are steroid-dependent. This is in case you are ever in any kind of accident and are unconscious--the paramedics will know to get you a shot of HC immediately since your body can't naturally produce the cortisol it needs to cope with the shock.
-When you are sick, have surgery, or encounter a majorly stressful situation, you will need to updose your HC. This is a great guide to that:
I had 2 adrenal crisis both when I managed to wean down to 5mg the first one I went unconscious and was too weak to move so the paramedics had to give me iv hydrocortisone and I had fluids in the hospital the 2nd time I was really sick for a week and couldn’t keep anything down and ended up having a chest infection and asthma attack so my pred went up to 40 and I haven’t yet gone past 30. Both times I was told I went down on my pred too quickly. I am now under a specialist and when I get my pred down to a certain amount they are going to do tests on me to check my cortisol levels to make sure they are at a safe level before they can begin weaning me further and will keep doing tests to check every time I wean and if my levels drop then I will have to increase it by 5 and stay at that level. Hope that helps
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